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Perspective

I have had a bit of a blogging break recently. It’s been Summer after all and in all honestly, I have struggled with what to write about. Life with Marigold continues to be a series of highs and lows, as with any straightforward child. She is developing all the time and learning new physical and cognitive skills, which is so wonderful. It is the best thing in the world to see her finally clapping her hands, copying things we do and noises we make, playing with toys and musical instruments (she loves a percussion instrument, I have made preliminary calls to Italia Conti stage school etc.) Of course, she is still delayed, but she is doing things in her own time and continues to amaze us with what she is able to learn. She is eating more and growing, trying desperately to move, and although hindered by her weak muscle tone, this too is improving slowly. She is still a remarkably sweet-natured, placid, super happy little girl and her parents and her brother love her dearly.

On the down side, we have had more bouts of illness, weeks of fevers, vomiting, food strike and epic coughing episodes when she has succumbed to one of her respiratory tract infections, and that is always hard. We are also now plugged in for so much therapy and early intervention, it is fairly overwhelming. Factoring in appointments for physio, occupational therapy, speech and language therapy along with general paediatrician appointment and assessments, emergency doctor appointments, follows ups for audiology, urology, opthamology, trips to the salt cave and chiropractor …trying to remember and attend all her appointments is a job in itself, one which myself and the husband try to juggle around our existing jobs with the help of our devoted nanny (and yes, how lucky we are to be able to afford her). Honestly, if I had time for a nervous breakdown I would probably have one. But I don’t. So we just take it day by day, buoyed by consistently positive feedback from Marigold’s therapists about the progress she is making and the fact that we are doing as much as we can to help her achieve her potential.

So there were a few things I thought about writing about: being overwhelmed by therapy was one of them. But at the end of the day, Marigold may have challenges, but she is hooked into a team of some of the best specialists to help her through them, who we see on a regular basis. We live down the road from an amazing GP practice who will see her at the drop of a hat to prescribe whatever medication she needs. We are able, thanks to our jobs, to provide her with a comfortable home with all the developmental toys, books and accessories she could ever need. She has a loving network of family and friends around her in a safe, progressive country with inclusive practices.

So that seemed a bit meaningless really. As like everyone, and it doesn’t matter whether you are a parent or not, I was deeply affected last week by the picture of Aylan Kurdi which really finally highlights to all of us how desperate the refugee crisis is. Isn’t it strange, just that one image has had such a profound affect on the world? Because everyone looks at that picture and sees either their own child, or a relative, a nephew, a cousin, a godchild, and how easily it could have been them, had they just been born in another country.

As with everyone, the thought of vulnerable children in such utterly terrifying circumstances breaks my heart. It also makes me think of something else. According to Unique, the Rare Chromosome Disorder charity (www.rarechromo.org) as many as one every two hundred children are born with a rare chromosome disorder. The condition may have significant or little impact on the individual, but in the the majority of cases, it will have some kind of impact on health and development. Amongst those vulnerable refugee children being forced to flee from places such as Syria, Central African Republic and South Sudan because of conflicts, there will be many with genetic conditions such as Marigold which result in, amongst other things, physical disabilities, intellectual disabilities, medical complications, autism, seizures, sensory processing disorders. Children who need daily medicines and intervention to survive…the most vulnerable of the most vulnerable.

I am not the most articulate or informed writer on things like this, so I will keep this brief. I look at Aylan Kurdi and think a child like Marigold, with her extremely low immunity and susceptibility to respiratory illnesses, could never make it through a winter camped at Calais, or living in a refugee camp at a Syrian, Turkish or Iraq border, or just living rough in the worst circumstances imaginable, with no food, water, warm clothes or sanitation. Just a week for Marigold without access to her reflux and bowel medication would render her very ill indeed. So for those of you who read this blog, this is yet another shout out, that there cannot be enough funds to help those refugee families who need our help. Even if you have donated already, please consider donating just another £5 to one of the charities below, or any other: